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myeloma and mds

manti
Posts: 1
Joined: Jun 2005

Hi. My husband is a myeloma patient, diagnosed in July 2000. He had a year of heavy chemo (his doctor at the time thought he would not be eligible for a stem cell transplant because he had kidney failure due to the myeloma. However, he went to UAMS and they did a tandem transplant in 2003.
After 14 months, he is now relapsed and is in stage IIIB. They started him on a very aggressive treatment Velcade, Dexamethasone and Thalidomide.
But after just 1 cycle, his oncologist here in Maine has decided it's too hard on his body. His platelets plummeted to 6 and he was requiring blood and platelet transfusions. The MDS is the other issue--causing his counts to be very low.
Does anyone have any suggestions? We are transferring to Dana Farber in Boston and are hoping the docs there may have some ideas. I have a listening ear, if anyone wants to talk.

ggold
Posts: 3
Joined: Jun 2005

A recent study at Moffit in Tampa has good hope for your husband. Dr. List is leading a study with a drug called rivlamid. or sounds like it. I have been diagnosed with myelofibrosis, a relative to your husbands disease and right now I am not being treated but being watched. I suggest making some contact to Moffit. It is a test/clinical trial, but maybe there is some way he can get on it. The results so far have been stunning. Good Luck and God Bless.

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